Transition for adolescents with a rare disease: results of a nationwide German project
Purpose The transition process from paediatric/adolescent to adult medical care settings is of utmost importance for the future health of adolescents with chronic diseases and poses even more difficulties in the context of rare diseases (RDs). Paediatric care teams are challenged to deliver adolesce...
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| Published in | Orphanet journal of rare diseases Vol. 18; no. 1; pp. 93 - 9 |
|---|---|
| Main Authors | , , , , , , , , , , , , , , , , , , , , , , , , , , , , |
| Format | Journal Article |
| Language | English |
| Published |
London
BioMed Central
25.04.2023
BioMed Central Ltd BMC |
| Subjects | |
| Online Access | Get full text |
| ISSN | 1750-1172 1750-1172 |
| DOI | 10.1186/s13023-023-02698-2 |
Cover
| Abstract | Purpose
The transition process from paediatric/adolescent to adult medical care settings is of utmost importance for the future health of adolescents with chronic diseases and poses even more difficulties in the context of rare diseases (RDs). Paediatric care teams are challenged to deliver adolescent-appropriate information and structures. Here we present a structured transition pathway which is patient-focused and adoptable for different RDs.
Methods
The transition pathway for adolescents 16 years and older was developed and implemented as part of a multi-centre study in 10 university hospitals in Germany. Key elements of the pathway included: assessment of patients’ disease-related knowledge and needs, training/educational and counselling sessions, a structured epicrisis and a transfer appointment jointly with the paediatric and adult specialist. Specific care coordinators from the participating university hospitals were in charge of organization and coordination of the transition process.
Results
Of a total of 292 patients, 286 completed the pathway. Deficits in disease-specific knowledge were present in more than 90% of participants. A need for genetic or socio-legal counselling was indicated by > 60%. A mean of 2.1 training sessions per patient were provided over a period of almost 1 year, followed by the transfer to adult care in 267 cases. Twelve patients remained in paediatric care as no adult health care specialist could be identified. Targeted training and counselling resulted in improved disease-specific knowledge and contributed to empowering of patients.
Conclusion
The described transition pathway succeeds to improve health literacy in adolescents with RDs and can be implemented by paediatric care teams in any RD specialty. Patient empowerment was mainly achieved by individualized training and counselling. |
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| AbstractList | The transition process from paediatric/adolescent to adult medical care settings is of utmost importance for the future health of adolescents with chronic diseases and poses even more difficulties in the context of rare diseases (RDs). Paediatric care teams are challenged to deliver adolescent-appropriate information and structures. Here we present a structured transition pathway which is patient-focused and adoptable for different RDs. The transition pathway for adolescents 16 years and older was developed and implemented as part of a multi-centre study in 10 university hospitals in Germany. Key elements of the pathway included: assessment of patients' disease-related knowledge and needs, training/educational and counselling sessions, a structured epicrisis and a transfer appointment jointly with the paediatric and adult specialist. Specific care coordinators from the participating university hospitals were in charge of organization and coordination of the transition process. Of a total of 292 patients, 286 completed the pathway. Deficits in disease-specific knowledge were present in more than 90% of participants. A need for genetic or socio-legal counselling was indicated by > 60%. A mean of 2.1 training sessions per patient were provided over a period of almost 1 year, followed by the transfer to adult care in 267 cases. Twelve patients remained in paediatric care as no adult health care specialist could be identified. Targeted training and counselling resulted in improved disease-specific knowledge and contributed to empowering of patients. The described transition pathway succeeds to improve health literacy in adolescents with RDs and can be implemented by paediatric care teams in any RD specialty. Patient empowerment was mainly achieved by individualized training and counselling. The transition process from paediatric/adolescent to adult medical care settings is of utmost importance for the future health of adolescents with chronic diseases and poses even more difficulties in the context of rare diseases (RDs). Paediatric care teams are challenged to deliver adolescent-appropriate information and structures. Here we present a structured transition pathway which is patient-focused and adoptable for different RDs. The transition pathway for adolescents 16 years and older was developed and implemented as part of a multi-centre study in 10 university hospitals in Germany. Key elements of the pathway included: assessment of patients' disease-related knowledge and needs, training/educational and counselling sessions, a structured epicrisis and a transfer appointment jointly with the paediatric and adult specialist. Specific care coordinators from the participating university hospitals were in charge of organization and coordination of the transition process. Of a total of 292 patients, 286 completed the pathway. Deficits in disease-specific knowledge were present in more than 90% of participants. A need for genetic or socio-legal counselling was indicated by > 60%. A mean of 2.1 training sessions per patient were provided over a period of almost 1 year, followed by the transfer to adult care in 267 cases. Twelve patients remained in paediatric care as no adult health care specialist could be identified. Targeted training and counselling resulted in improved disease-specific knowledge and contributed to empowering of patients. The described transition pathway succeeds to improve health literacy in adolescents with RDs and can be implemented by paediatric care teams in any RD specialty. Patient empowerment was mainly achieved by individualized training and counselling. Purpose The transition process from paediatric/adolescent to adult medical care settings is of utmost importance for the future health of adolescents with chronic diseases and poses even more difficulties in the context of rare diseases (RDs). Paediatric care teams are challenged to deliver adolescent-appropriate information and structures. Here we present a structured transition pathway which is patient-focused and adoptable for different RDs. Methods The transition pathway for adolescents 16 years and older was developed and implemented as part of a multi-centre study in 10 university hospitals in Germany. Key elements of the pathway included: assessment of patients’ disease-related knowledge and needs, training/educational and counselling sessions, a structured epicrisis and a transfer appointment jointly with the paediatric and adult specialist. Specific care coordinators from the participating university hospitals were in charge of organization and coordination of the transition process. Results Of a total of 292 patients, 286 completed the pathway. Deficits in disease-specific knowledge were present in more than 90% of participants. A need for genetic or socio-legal counselling was indicated by > 60%. A mean of 2.1 training sessions per patient were provided over a period of almost 1 year, followed by the transfer to adult care in 267 cases. Twelve patients remained in paediatric care as no adult health care specialist could be identified. Targeted training and counselling resulted in improved disease-specific knowledge and contributed to empowering of patients. Conclusion The described transition pathway succeeds to improve health literacy in adolescents with RDs and can be implemented by paediatric care teams in any RD specialty. Patient empowerment was mainly achieved by individualized training and counselling. Abstract Purpose The transition process from paediatric/adolescent to adult medical care settings is of utmost importance for the future health of adolescents with chronic diseases and poses even more difficulties in the context of rare diseases (RDs). Paediatric care teams are challenged to deliver adolescent-appropriate information and structures. Here we present a structured transition pathway which is patient-focused and adoptable for different RDs. Methods The transition pathway for adolescents 16 years and older was developed and implemented as part of a multi-centre study in 10 university hospitals in Germany. Key elements of the pathway included: assessment of patients’ disease-related knowledge and needs, training/educational and counselling sessions, a structured epicrisis and a transfer appointment jointly with the paediatric and adult specialist. Specific care coordinators from the participating university hospitals were in charge of organization and coordination of the transition process. Results Of a total of 292 patients, 286 completed the pathway. Deficits in disease-specific knowledge were present in more than 90% of participants. A need for genetic or socio-legal counselling was indicated by > 60%. A mean of 2.1 training sessions per patient were provided over a period of almost 1 year, followed by the transfer to adult care in 267 cases. Twelve patients remained in paediatric care as no adult health care specialist could be identified. Targeted training and counselling resulted in improved disease-specific knowledge and contributed to empowering of patients. Conclusion The described transition pathway succeeds to improve health literacy in adolescents with RDs and can be implemented by paediatric care teams in any RD specialty. Patient empowerment was mainly achieved by individualized training and counselling. Purpose The transition process from paediatric/adolescent to adult medical care settings is of utmost importance for the future health of adolescents with chronic diseases and poses even more difficulties in the context of rare diseases (RDs). Paediatric care teams are challenged to deliver adolescent-appropriate information and structures. Here we present a structured transition pathway which is patient-focused and adoptable for different RDs. Methods The transition pathway for adolescents 16 years and older was developed and implemented as part of a multi-centre study in 10 university hospitals in Germany. Key elements of the pathway included: assessment of patients' disease-related knowledge and needs, training/educational and counselling sessions, a structured epicrisis and a transfer appointment jointly with the paediatric and adult specialist. Specific care coordinators from the participating university hospitals were in charge of organization and coordination of the transition process. Results Of a total of 292 patients, 286 completed the pathway. Deficits in disease-specific knowledge were present in more than 90% of participants. A need for genetic or socio-legal counselling was indicated by > 60%. A mean of 2.1 training sessions per patient were provided over a period of almost 1 year, followed by the transfer to adult care in 267 cases. Twelve patients remained in paediatric care as no adult health care specialist could be identified. Targeted training and counselling resulted in improved disease-specific knowledge and contributed to empowering of patients. Conclusion The described transition pathway succeeds to improve health literacy in adolescents with RDs and can be implemented by paediatric care teams in any RD specialty. Patient empowerment was mainly achieved by individualized training and counselling. Keywords: Transition, Rare disease, Pathway, Empowerment, Health literacy, Adolescent health The transition process from paediatric/adolescent to adult medical care settings is of utmost importance for the future health of adolescents with chronic diseases and poses even more difficulties in the context of rare diseases (RDs). Paediatric care teams are challenged to deliver adolescent-appropriate information and structures. Here we present a structured transition pathway which is patient-focused and adoptable for different RDs.PURPOSEThe transition process from paediatric/adolescent to adult medical care settings is of utmost importance for the future health of adolescents with chronic diseases and poses even more difficulties in the context of rare diseases (RDs). Paediatric care teams are challenged to deliver adolescent-appropriate information and structures. Here we present a structured transition pathway which is patient-focused and adoptable for different RDs.The transition pathway for adolescents 16 years and older was developed and implemented as part of a multi-centre study in 10 university hospitals in Germany. Key elements of the pathway included: assessment of patients' disease-related knowledge and needs, training/educational and counselling sessions, a structured epicrisis and a transfer appointment jointly with the paediatric and adult specialist. Specific care coordinators from the participating university hospitals were in charge of organization and coordination of the transition process.METHODSThe transition pathway for adolescents 16 years and older was developed and implemented as part of a multi-centre study in 10 university hospitals in Germany. Key elements of the pathway included: assessment of patients' disease-related knowledge and needs, training/educational and counselling sessions, a structured epicrisis and a transfer appointment jointly with the paediatric and adult specialist. Specific care coordinators from the participating university hospitals were in charge of organization and coordination of the transition process.Of a total of 292 patients, 286 completed the pathway. Deficits in disease-specific knowledge were present in more than 90% of participants. A need for genetic or socio-legal counselling was indicated by > 60%. A mean of 2.1 training sessions per patient were provided over a period of almost 1 year, followed by the transfer to adult care in 267 cases. Twelve patients remained in paediatric care as no adult health care specialist could be identified. Targeted training and counselling resulted in improved disease-specific knowledge and contributed to empowering of patients.RESULTSOf a total of 292 patients, 286 completed the pathway. Deficits in disease-specific knowledge were present in more than 90% of participants. A need for genetic or socio-legal counselling was indicated by > 60%. A mean of 2.1 training sessions per patient were provided over a period of almost 1 year, followed by the transfer to adult care in 267 cases. Twelve patients remained in paediatric care as no adult health care specialist could be identified. Targeted training and counselling resulted in improved disease-specific knowledge and contributed to empowering of patients.The described transition pathway succeeds to improve health literacy in adolescents with RDs and can be implemented by paediatric care teams in any RD specialty. Patient empowerment was mainly achieved by individualized training and counselling.CONCLUSIONThe described transition pathway succeeds to improve health literacy in adolescents with RDs and can be implemented by paediatric care teams in any RD specialty. Patient empowerment was mainly achieved by individualized training and counselling. PurposeThe transition process from paediatric/adolescent to adult medical care settings is of utmost importance for the future health of adolescents with chronic diseases and poses even more difficulties in the context of rare diseases (RDs). Paediatric care teams are challenged to deliver adolescent-appropriate information and structures. Here we present a structured transition pathway which is patient-focused and adoptable for different RDs.MethodsThe transition pathway for adolescents 16 years and older was developed and implemented as part of a multi-centre study in 10 university hospitals in Germany. Key elements of the pathway included: assessment of patients’ disease-related knowledge and needs, training/educational and counselling sessions, a structured epicrisis and a transfer appointment jointly with the paediatric and adult specialist. Specific care coordinators from the participating university hospitals were in charge of organization and coordination of the transition process.ResultsOf a total of 292 patients, 286 completed the pathway. Deficits in disease-specific knowledge were present in more than 90% of participants. A need for genetic or socio-legal counselling was indicated by > 60%. A mean of 2.1 training sessions per patient were provided over a period of almost 1 year, followed by the transfer to adult care in 267 cases. Twelve patients remained in paediatric care as no adult health care specialist could be identified. Targeted training and counselling resulted in improved disease-specific knowledge and contributed to empowering of patients.ConclusionThe described transition pathway succeeds to improve health literacy in adolescents with RDs and can be implemented by paediatric care teams in any RD specialty. Patient empowerment was mainly achieved by individualized training and counselling. |
| ArticleNumber | 93 |
| Audience | Academic |
| Author | Matar, Nora Baumgarten, Sylvana Kiewert, Cordula Lee-Kirsch, Min Ae Hauck, Fabian Schramm, Christoph Choukair, Daniela Grasemann, Corinna Atinga, Janet Schündeln, Michael M. Körholz, Julia Klein, Christoph Wainwright, Kerstin Höppner, Jakob Muntau, Ania C. Berner, Reinhard Burgard, Peter Graessner, Holm Grüters, Annette Kretschmer, Tanita Bauer, Jens J. Hoffmann, Georg F. Manka, Eva Heinen, André Hiort, Olaf Krude, Heiko Mittnacht, Janna Müller, Gabriele Kurth, Tobias |
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Universitätsmedizin Berlin – sequence: 8 givenname: Reinhard surname: Berner fullname: Berner, Reinhard organization: Children’s Department and University Centre for Rare Diseases (USE), University Hospital Dresden – sequence: 9 givenname: Min Ae surname: Lee-Kirsch fullname: Lee-Kirsch, Min Ae organization: Children’s Department and University Centre for Rare Diseases (USE), University Hospital Dresden – sequence: 10 givenname: Fabian orcidid: 0000-0001-9644-2003 surname: Hauck fullname: Hauck, Fabian organization: Dr von Hauner Children’s Hospital, University Hospital and Munich Centre for Rare Diseases (M-ZSELMU), Ludwig-Maximilians-University Munich – sequence: 11 givenname: Kerstin surname: Wainwright fullname: Wainwright, Kerstin organization: Institute of Public Health, Charité - Universitätsmedizin Berlin – sequence: 12 givenname: Sylvana surname: Baumgarten fullname: Baumgarten, Sylvana organization: Institute of Public Health, Charité - Universitätsmedizin Berlin – sequence: 13 givenname: Janet surname: Atinga fullname: Atinga, Janet organization: Division of Rare Diseases, Department of Paediatrics, St. Josef-Hospital Bochum, Ruhr-University Bochum, Centre for Rare Diseases Ruhr CeSER, Ruhr-University Bochum and Witten/Herdecke University – sequence: 14 givenname: Jens J. surname: Bauer fullname: Bauer, Jens J. organization: Division of Rare Diseases, Department of Paediatrics, St. Josef-Hospital Bochum, Ruhr-University Bochum, Centre for Rare Diseases Ruhr CeSER, Ruhr-University Bochum and Witten/Herdecke University – sequence: 15 givenname: Eva surname: Manka fullname: Manka, Eva organization: Department of Paediatrics II and Essener Centre for Rare Diseases, University Hospital Essen, University Duisburg-Essen – sequence: 16 givenname: Julia surname: Körholz fullname: Körholz, Julia organization: Children’s Department and University Centre for Rare Diseases (USE), University Hospital Dresden – sequence: 17 givenname: Cordula surname: Kiewert fullname: Kiewert, Cordula organization: Department of Paediatrics II and Essener Centre for Rare Diseases, University Hospital Essen, University Duisburg-Essen – sequence: 18 givenname: André surname: Heinen fullname: Heinen, André organization: Children’s Department and University Centre for Rare Diseases (USE), University Hospital Dresden – sequence: 19 givenname: Tanita surname: Kretschmer fullname: Kretschmer, Tanita organization: Children’s Department and University Centre for Rare Diseases (USE), University Hospital Dresden – sequence: 20 givenname: Tobias orcidid: 0000-0001-7169-2620 surname: Kurth fullname: Kurth, Tobias organization: Institute of Public Health, Charité - Universitätsmedizin Berlin – sequence: 21 givenname: Janna surname: Mittnacht fullname: Mittnacht, Janna organization: Centre for Child and Adolescent Medicine and and Centre for Rare Diseases, University Hospital Heidelberg – sequence: 22 givenname: Christoph surname: Schramm fullname: Schramm, Christoph organization: Martin Zeitz Centre for Rare Diseases, University Medical Centre Hamburg-Eppendorf – sequence: 23 givenname: Christoph surname: Klein fullname: Klein, Christoph organization: Dr von Hauner Children’s Hospital, University Hospital and Munich Centre for Rare Diseases (M-ZSELMU), Ludwig-Maximilians-University Munich – sequence: 24 givenname: Holm surname: Graessner fullname: Graessner, Holm organization: Institute for Medical Genetics and Applied Genomics, University of Tuebingen – sequence: 25 givenname: Olaf surname: Hiort fullname: Hiort, Olaf organization: Departments of Paediatrics, University Medical Centre Schleswig-Holstein – sequence: 26 givenname: Ania C. surname: Muntau fullname: Muntau, Ania C. organization: University Children’s Hospital, University Medical Center Hamburg Eppendorf – sequence: 27 givenname: Annette surname: Grüters fullname: Grüters, Annette organization: Institute for Experimental Paediatric Endocrinology and Centre for Rare Diseases, Charité - Universitätsmedizin Berlin – sequence: 28 givenname: Georg F. orcidid: 0000-0002-6593-896X surname: Hoffmann fullname: Hoffmann, Georg F. organization: Centre for Child and Adolescent Medicine and and Centre for Rare Diseases, University Hospital Heidelberg – sequence: 29 givenname: Daniela orcidid: 0000-0002-1631-3883 surname: Choukair fullname: Choukair, Daniela organization: Centre for Child and Adolescent Medicine and and Centre for Rare Diseases, University Hospital Heidelberg |
| BackLink | https://www.ncbi.nlm.nih.gov/pubmed/37098531$$D View this record in MEDLINE/PubMed |
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| CitedBy_id | crossref_primary_10_1016_j_anpede_2023_09_014 crossref_primary_10_3389_fneur_2024_1460187 crossref_primary_10_1186_s12969_024_00963_7 crossref_primary_10_1016_j_anpedi_2023_09_016 crossref_primary_10_1111_cen_15105 crossref_primary_10_1186_s13023_024_03345_0 crossref_primary_10_1016_j_pedn_2024_07_026 crossref_primary_10_1007_s00787_024_02547_y |
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| Keywords | Adolescent health Transition Health literacy Rare disease Pathway Empowerment |
| Language | English |
| License | 2023. The Author(s). Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data. |
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The transition process from paediatric/adolescent to adult medical care settings is of utmost importance for the future health of adolescents with... The transition process from paediatric/adolescent to adult medical care settings is of utmost importance for the future health of adolescents with chronic... Purpose The transition process from paediatric/adolescent to adult medical care settings is of utmost importance for the future health of adolescents with... PurposeThe transition process from paediatric/adolescent to adult medical care settings is of utmost importance for the future health of adolescents with... Abstract Purpose The transition process from paediatric/adolescent to adult medical care settings is of utmost importance for the future health of adolescents... |
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| SubjectTerms | Adolescent Adolescent health Adolescents Analysis Child Chronic Disease Counseling Empowerment Germany Health aspects Health care Health literacy Health surveys Hospitals Human Genetics Humans Medical research Medicine Medicine & Public Health Other Pathway Patient Participation Patients Pediatrics Pharmacology/Toxicology Prevention Questionnaires Rare disease Rare Diseases Risk factors Services Teams Teenagers Transition Transitional care Young adults Youth |
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| Title | Transition for adolescents with a rare disease: results of a nationwide German project |
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